Crohn's Remission

I have waited a long time to write this post. 

A year to be exact. 

There were some dark times as I went through my flare but it started years before even being diagnosed. 

I had been cautiously optimistic after my last remicade appointment. My wonderful GI doc had doubled my usual dose to the highest maximum allowed to try and kick me into remission. Within a couple of days, my lingering symptoms were gone. 

At the same time I received two more iron infusions as my levels had plummeted once again. Then it turned to a waiting game. 

I kept waiting for the return of symptoms but after a month or so started to think about it less. 

I raced when feeling less than ideal (usually my own fault, because, wine) - and was setting PRs. 

Three to be exact in the 5K, 10K and 5 mile and started to gain confidence. 

I went to my hematologist for blood work last week and when we got the lab results we were equally floored.

I started at an iron level of 2, peaked at 14 before it slumped again and just came back at a 181 - off the charts. 

I spent this morning hooked up to my favorite IV and based on symptoms (aka basically NONE) for all intent and purposes I am in remission (we have to do a colonoscopy to check how the ulcers are still). 

Living that Remicade life.

This is as good as it gets folks. There is no cure but hopefully I remain flare free for a very long time. 

Even as I started feeling better in the latter part of this year I kept waiting for the other shoe to drop and the flare to return (case and point I refused to use my vacation due to wanting to have a bank in case I got real sick again. I now have a month accrued...and am taking two weeks of starting next weekend thank you very much). 

But now, my mentality has done a total 180. Most days I feel amazing, or you know, normal.  But to feel normal and healthy IS amazing. I still get some issues every now and again but I can push through more as an "inconvenience" versus before being knocked out and sidelined. 

I am thankful. I am so so so very thankful. For those who have supported me through the darkest time, as well as for modern medicine. There may not be a cure but the advances made thus far have gotten me to this point and allowed me to regain my life.

I am thankful for a team of doctors that would not let me accept that feeling 75% as okay. I am thankful that they never once tried to deter me from leading an active lifestyle. I am thankful for the blogging community that has connected me with others in the same position and helped me see that there was a light at the end of the tunnel. 

I've never felt so blessed. 

Me vs. Crohn’s: I think I am Finally Winning

Monday was my second Remicade infusion. In the past 2 ½ weeks it is mind boggling just how much BETTER life has gotten.

Let me back up a little with a little time line though, and brace yourself this is lengthy:

Symptoms began as far as I can recollect back in 2012. That also coincides with when I got more “serious” with distance running. I was racing a lot (at one point I think I ran about 6 half marathons over 8 weeks). And when I went to the doctor concerned I was told it was running induced and dismissed. I figured fair enough I have a “sensitive” stomach and running was intensifying things - everyone talks about that it seemed logical. 

I tweaked food choices. I got pretty thin the summer of 2012 because I was basically scared of food. 

Continued to struggle though marathon training cycles. I would have a few months of nothing more than “urges” on runs then followed by a few months of really really shitty can’t even attempt to run outside type training. I think I trained the majority of my cycle leading up to my goal marathon fall 2013 on the treadmill (which would probably prove my demise and DNF in that marathon).

I tapered back the running going into 2014 totally burned out before signing up for Chicago and NYCM again. I had a pretty stellar summer of running. I would have to stop MOST long runs but it wasn’t awful. I specifically remember having a date night at Dos Caminos the day before a 20 miler getting drunk eating cheesy, bean goodness and being totally fine the next day for the long run. It was as if I was daring my “sensitive stomach” to react and it didn’t. I thought yay I don’t have to be so careful.

Then the week before Chicago shit got real. As I was tapering I started to feel like crap. I tried to stay positive but all of a sudden everything that had gone right for the past few months disappeared and I was miserable. And then Chicago happened and I was in every portapotty at every stop on the course. I cried. I was miserable. I threw my Garmin at my friend around mile 16. But still chalking it up to my stomach being sensitive.

I tried to ignore just how not normal it was (blood like a lot of blood all the time) and spending up to 20 trips a day in the bathroom.

Then NYCM happened and I think I literally only ate Kaiser rolls and grilled chicken for a week preceding hoping to be okay and I miraculously wasn’t quite as miserable.

But then a downward spiral continued. I finally went to my doctor and she immediately was like – You know absolutely nothing about this is even borderline normal and you need a specialist immediately. She also made me go gluten and dairy free.

Things got even worse. I finally make it to the GI and he seems awesome! He listens and schedules a colonoscopy for 2 days later.

Colonoscopy happens. He immediately puts me on Canasa as he awaits biopsy results but says it looks like Crohn’s. I wait. It’s the holidays.

He tells me the results are inconclusive yet puts me on Asacol. I cry. I am frustrated. He is putting me on medications but saying he doesn’t know. I am perplexed. I reach out to social media to use it for its powers of good and get a doctor recommendation.

I go to my new doctor who takes one look at my colonoscopy results and tells me, yes he is 90% sure this is Crohn’s. At the time I am feeling a bit better on the Asacol and we continue on that path. (side note he is awesome – he spent 2 hours with me that first day).

About a week later everything falls apart and I start getting sicker than I have been yet. He schedules me for a flex sigmoidoscopy. I get to be awake during this, yay! Immediately he diagnoses me as severe and puts me on Prednisone and Rowasa. I get a little sad but happy we are stepping up our game.

A week later, I am not improving and seriously getting worse. He goes through some options but decide that Remicade is the best course of action given the severity and non-responsiveness of steroids. We begin the approval process with my insurance and a week later it is being shipped to my doctor.

That Monday for the first infusion I said some prayers that this would be the answer. I honestly wasn’t even that concerned or sad that it had gotten to this I was just hoping this would help. The infusion went fine. No reactions and I left in a Benadryl daze (take Benadryl for the infusion) and went home.

That night and the day after I felt like a bus had hit me and was a little sad to feel so crappy BUT within 48 hours I was getting better symptom wise. I wasn’t running to the bathroom throughout the night, bleeding was slowing down, and I could make it through a meeting at work not desperate to leave for the bathroom.

About 10 days after that initial infusion as I got on the train I realized I didn’t seek out the train car with the bathroom. I WASN’T WORRIED. After 6 months of plotting my life out around bathrooms and avoiding things because I wasn’t sure of having access, I finally felt I was going to regain my life.

I had my 2^nd infusion on Monday and this time I felt fine after and the following day. In fact I had more energy! I even ran Tuesday and this morning BEFORE work. I haven’t worked out before work in months.

I have so much hope now. I got to a very dark place for a while. My non-existent iron levels had me doing nothing but work, gym and sleep. I was stubborn in that I more or less kept up a gym routine but good lord I was fucking tired as shit for months. Every class I took yoga, spin, running, boot camp I gave a disclaimer to the instructor that if I ran out there was a reason.

For some reason my symptoms would get the worst the second I went to bed. I would be up the majority of the night running back and forth bed to bathroom. I occasionally brought my pillow to the hallway and laid down outside the bathroom because it would get exhausting. Then trying to actually get to work and being afraid to leave my house for the train…it was awful. Running to the bathroom constantly at work was taxing. Especially when the bathrooms closest to you are off the kitchenette. Hi that is fun.

But now, it is amazing how a couple of good weeks can erase months (and quite frankly years) of feeling awful. I am hopeful that the positive reaction I am having to the Remicade continues and won’t stop. I know many have had success for years and am hoping for that same success rate.

But basically, it feels good to have my life back. I finally feel like I can reclaim normalcy as we get to remission.

And if you are still with me, thank you! I have had so many messages that have picked up my spirit and lifted me even when I was at my lowest. It helped oh so much when you feel so alone. It has truly been appreciated!